Hi there,

We are home!! It is so nice to have Cody with no I.V. tethers…pulse/ox monitors, and electrodes attached to him! I can finally pick him up and walk around with him. He is free.
We made it thru the 24 hour video/EEG yesterday (see attached bizarre photo.) After rubbing 27 spots raw on his head to attach the electrodes…they removed them with fingernail polish remover. It stung his little head so bad - it's so red and raw. All his little strands of hair are balled up with glue which we'll probably be picking off till he's 20!

And after all that trauma…the EEG produced bad news. It showed that his little brain waves have gotten even worse since he's been on the meds. The neurologist was very disappointed. He's an odd case because his seizures have reduced to 1 a day - but his brain is still exploding. No one knows why. She upped his steroid dose as high as it can go and we'll re-test him by EEG on Thursday. If it's still the same or worse, we'll have exhausted the steroid avenue which is about the only truly effective drug for this syndrome. That will be hugely bad news. We would have to resort to trying meds that don't have a fantastic track record. Essentially - it would probably mean that he'd likely progress down the trail toward developmental delay or retardation because they just can't get his brain to settle down. They say that the first thing we would notice is an inability to grasp with his hand…then trouble making direct eye contact. My heart is breaking as I write this at the thought of Cody slipping away from us.

The WEIRD part is that he is back to being about 80% himself - giggling, squealing, doing raspberries…altho he does trance out every few minutes and has a seizure once a day…in between he is a smile-meister. The neurologist is baffled by how he can function this way despite the fireworks in his brain. I say it's a testimony to the amazing person Cody Graves is. He is finding a way to break through the chaos and connect with us. Despite a week in the hospital, two EEG's, an MRI and Catscan - countless blood draws and shots - sleepless days and nights - I.V.'s, catheters and more - he chooses break through the craziness in his head & smile with an excitement and innocence that would make you cry.

My prayer request is this and only this: Please pray for Thursday's EEG to be PERFECT. We want a miracle here. We want the neurologist to be baffled. We want total healing. We can't imagine our lives without knowing our little hero fully. We want to see him ride a bike…get married…have kids of his own. Most of all - we can't imagine not being able to hear him say "I love you" to us.

We are scared, sad, yet hopeful because God knit him together in my womb & has a perfect plan for his life. Obviously we will love him the same no matter what. But the process of watching him regress is just not something we can imagine.

Life at home means us giving him a steroid shot every day (yikes!) and 4 Dr. or nurse visits a week. I am overwhelmed, but thrilled have him home in my arms. I am having a professional photographer come over Monday when Cody will star in a huge photo shoot. Altho it may seem dramatic…I want to capture every single smile and expression he makes just in case God - for some reason - doesn't heal him and he begins to regress.

So that is our life. Thanks for caring and reading. I'm not real good at returning emails or calls at the moment - but please consider this a gigantic hug and thank you for your words, prayers and hearts for our little guy. I will let you know how the EEG goes.

"With Christ in my vessel, I smile at the storm."

With much love,
Shawna

June 7

Hi there friends...

Cody's had an "okay" couple of days since I last wrote. Being home is a dream...but brings it's share of challenges. Don went back to work today - a new job in Battle Ground as controller of a Construction company. So for the first time in a long time, I am left alone with Cody. His heart rate and blood pressure are elevated due to the steroids...he can't sleep...he's irritable...puffed up and bloated...and we have Dr. appt's from here to Oregon about every other day of the week. I hate driving with him in the car seat because I can't see him very well to determine if he has a seizure. I watch him at home for any twitch or tremor - we were told to take him to the E.R. if he has 3 seizures and he had two a couple of days ago so we are always on red alert.

We are broken hearted at 7pm every night because of his steroid injections that daddy gives while I hold him down. We cry every night we do this. He screams the whole time and it is quite a process as the steroid is about the density of honey and takes forever to shoot into his little leg muscle. His seizures seem to be almost gone the last 2 days - but have been replaced by super spacey/trance like moments all day. I don't know which is worse. If I lay him in his crib he just stares at the ceiling in a trance for a half hour if he's not jostled. Scary. The Dr. says this is 'encephalopathy' which is residual effects from his crazy brain waves. It's a sign they may no be calmed down yet.

But there are many times when his little personality breaks through and he smiles and babbles - we cherish those moments like you wouldn't believe. I'm in a frenzy of researching drugs, protocols, Dr.'s, side effects, etc... when I'm not with Cody (which isn't often.) Our big ticket item is still the EEG this Thursday so your continued prayers are so appreciated. His brain waves need to be improved to give us hope that he won't begin regressing. If they are this chaotic much longer they will begin to cause developmental delays or more. So improvement would be awesome. But healing would be even better! Please pray for God to bring order into the chaos in Cody's brain. He is a God of order...and nothing in Him is haphazard...so I pray God will bring organization and peace to Cody's little mind. Attached is another photo of us at a Dr. appt. to continue to attach his little face to our prayers.

We are so grateful for the prayers, calls, emails, meals and favors. There are no greater friends on the planet.

don and I wrote a song for Cody - it's to the tune of "little potato" and we sing it to him all day...it references the "40%" odds of him being normal.

"You're our 40% boy...you're our 40% boy...you're our 40% boy, you're gonna grow up...and live a happy life!"

That's our way of coping...affixing ourselves to hope and faith. Please join us.

"Faith, mighty faith, the promise sees
And looks to God alone,
Laughs at impossibilities,
And cries, "It shall be done."

With all our love,
Shawna, Don and Cody bug.

June 9

Hello again...

We are finally home after a grueling day of blood draws, EEG and long appts. with a neurologist and a pediatrician. We didn't hear the news we'd hoped for. Cody's EEG was improved - but only by 40%. And he had 4 seizures so far today which is alarming. We are in a race against the clock because his little brain is so chaotic - and this is just not enough improvement. She says the steroids just aren't working. Other than steroids, there are some oral medications to try - but it's kind of like trying to treat cancer with something other than chemotherapy. She doesn't know how long he can go on with these crazy brain waves before they begin to affect his development - it's just a "wait and see" game. So we're weaning him off the steroids and putting him on depakote in hopes that it may help. She says that his seizures are particularly hard to stop - and that his brain waves are particularly resistant to meds - and now gives him only a 20% chance of "normalcy" versus an 80% chance of developmental delays, retardation, autism, etc. I just abhor her pessimism...talking with her is like taking an ice cold shower.

We were crushed. But we remain hopeful. God didn't answer our prayers for a perfect EEG.....YET. But He is giving us a hope that is not our own. Both Don and I walked away feeling a sense in our spirits - that Cody will be in that 20%.

The depakote's big side effect is liver failure in babies - so prayer against that would be great. I am seeking a 2nd opinion at OHSU and would love prayer to grease those wheels as it usually takes 2 months to get an appt. with the top dog in pediatric neurology there. We've taken Cody for cranial sacral osteopathy which is basically someone making sure his body is in alignment from head to toe. We're seeing a nutrition therapist. I take care of Cody all day and spend all night on the internet or reading books trying to find the needle in the haystack that will help him. I suppose it's my way of coping.

In the midst of it all, he sat up for the first time all by himself today which he's never done - he's trying to crawl - all developmental milestones that show he's still moving forward. The Dr. couldn't believe how strong he is - how coherent - and how developmentally ahead he is despite the chaos in his brain. She said that is a good sign.

Your prayers are so appreciated. I've had people from all over the country write me...many who I don't even know...to say they are praying, even fasting, for Cody. We are touched beyond measure. As Robert Case said last week: "Cody is the safest person there is." He is being interceded for constantly. Would you continue to pray? Specifically for his seizures to stop and his brain to normalize...SOON.

It's still the case that we are not supposed to have visitors - altho we so appreciate the offers. The steroids have made his immune system too weak.

It's so tough living with the unknown - having to wait to see what happens with our very hearts hanging in the balance. Today's "Streams in the Desert" is my motto:

There's a stream of trouble across my path; it is dark and deep and wide.
Bitter the hour the future hath when I cross it's swelling tide.
But I smile and sing and say: "I will hope and trust alway;
I'll bear the sorrow that comes tomorrow, but I'll borrow none today."

Tomorrow's bridge is a dangerous thing; I dare not cross it now.
I can see it's timbers sway and swing, and it's arches reel and bow.
O heart, you must hope alway; you must sing and trust and say:
"I'll bear the sorrow that comes tomorrow, but I"ll borrow none today."

God is bigger than statistics, bigger than Doctors, bigger than brain waves. I will trust Him with the life He created...my sweet little boy. My keyboard is wet with tears as I write this because trusting is so painful. But the One who created an angel as perfect as Cody can certainly be trusted. God gave him to us and we, in turn, give him back...and lay him at the foot of the cross where the blood rich in mercy and healing flows down. He is able.

With much love,
Shawna

June 12

Hello there -

Cody spent the weekend having more seizures. We came close to heading back to the hospital. Today it was 5 seizures that lasted 2-5 minutes and then 4 mini-ones that just involved raising one arm and quivering a bit. It is so unnerving and frustrating. We just can't seem to get them to stop - even on this new medicine. Cody is swelling up like a beach ball from the "juice" (steroids) - Don swears Cody will be able to lift our refrigerator with his pinkie if he keeps on taking these drugs! He's increasingly agitated and fussy - tho still smiling whenever he can. We have a heck of a time getting his meds down him - I have to give him 6 different meds every day - and each has it's own litany of "when" and "with what" that keeps me constantly on the run. Not to mention Cody developed an aversion to the medicine droppers we were using (can you blame him?) so we've had to get creative and figure out how to disguise the meds in his baby food, rice cereal, formula, etc.
8 times out of 10 he detects a hint of medicine in whatever we've hidden it in and spits it out.

One bit of good news is that I got an appt. Wednesday with the big wig at OHSU - a pediatric neurologist who specializes in epilepsy. It was an act of God to get in - literally. He has a 3 month waiting list - but one of the Dr's at Legacy Hospital took a liking to us during our week long stay and pulled some strings. So thanks if you prayed for that - it worked! The Dr. already said that he'd opt to keep Cody on the steroids for a full 3 weeks instead of taking him off as our current neurologist decided to do. Please pray for wisdom on my part to decide who to trust with our little guy - and what protocol to follow. I guess we discovered this syndrome in Cody faster than any other kid these Dr.'s have seen so they really have no standard for how to treat infantile spasms so early on. They think the steroids should have worked by now...but they've also never treated a child in the first week of onset. Usually they get kids once the syndrome has hit a plateau and the spasms are going away on their own.

So prayer requests: for wisdom for this new Dr. to "fix" our little boy. for Cody's seizures to STOP and for his brain waves to normalize. for Cody to stay safe despite the severe side efx. of these drugs. for stamina for me as I try to deal with giving him medicine, meeting his needs, and making important decisions all the while feeling crazed with worry and sleep deprivation. and for don as he balances the 2nd week of a brand new job with so much stress over Cody.

thanks again - i know your prayers are what's keeping all of us afloat. This was a tough weekend. I pray this week brings an end to seizures for our tough guy.

Blessings to all of you -
Shawna

June 15

Hello there,

We saw the 2nd opinion big dog at OHSU - We LOVED him. He didn't say much that was new or different...but his bedside manner was awesome. The whole office was abuzz the minute Cody came in - people got in line to squeeze his cheeks and make him giggle. The office manager said "we don't care if you need 2 hours with the Dr...that's what you'll get!" So we definitly got favor with these folks which is an answer to prayer.

Dr. Roberts quoted us the same 20% odds of normalcy. But he said he was encouraged by Cody's continued development...and that he saw signs on his EEG that his brain is still doing many things the way it should despite the chaos. He was very concerned that the seizures still happen (he's still having about 4-8 a day) and upped the depakote and B6.
He's keeping Cody on the steroids for the full 3 weeks, if not longer. He disagreed that we've exhausted the steroid resource -- and says there may still be a small chance of some turnaround with them (please, God!) He said, "I realize the gravity of upping his doses - it's not like we're givin' him celery - these meds are dirty and the side effects barbaric - but he has too much to lose not to be aggressive."

He's also going to do a more in-depth MRI and try a PET scan because the way Cody seizes (tipping his head to the left and only using one leg) is asymmetrical which is unusual for this syndrome. He said there are very very rare epilepsies that mimic infantile spasms...and wants to dig deeper to see if there's anything to see. These rare forms of epilepsy could bring good or bad news. Some involve pieces of the brain that just don't fire properly and could be fixed with brain surgery (and that was the GOOD news!) -- some involve abnormalities which could bring an even harsher diagnosis than infantile spasms. Again...we are left with the unknown. But I like it that he's a brainiac who is leaving no stone unturned.

Don and I are about to lose our minds - every night I go to bed thinking "tomorrow's a new day - maybe no more seizures!" Only to be woken up by Cody having one at 1am. We feel so helpless just watching them take over his little body every day. Which brings me to the prayer requests:

PLEASE PLEASE PLEASE pray for these seizures to go away. The Dr. doesn't know if they're doing damage or not and it's been 3 weeks of them. They have to stop!!!!! And in order for the seizures to stop, his brain has to normalize which is our 2nd request. He cannot go on much longer without beginning to regress in some way. We are desperate.

Also for protection from side efx of the drugs (high blood pressure & liver damage mostly.) Also puffiness, irritability, trouble sleeping, voracious appetite.)

For wisdom for this new Dr. Roberts in treating Cody. If there's any needle in the haystack to be found - that he'll find it.

Endurance for Don and I. We are at our wits end watching our poor baby have these spasms. It is just unbearable. We are sick every time we have to inject him with these scary steroids. We are exhausted by being on 24 hour seizure watch. We lay hands on him every night and pray - only to have him seize moments later. It just feels so huge and overpowering. It's so hard to know that God is allowing this without intervening...and hard to keep our spiritual chins up.

Thank you for reading - and for caring about us. Unless you reply and ask to be removed, I will continue to beg for prayer for Cody. I still have faith in our perfect God who is righteous, true and just.

"Do not be discouraged - it may be the last key on the ring that opens the door." Stansifer.
"Blessed is the one who waits." Daniel 12:12
We have a God who delights in impossibilities and who asks, 'Is anything too hard for me?' (Jer. 32.27)

with love,
Shawna

June 17

Hello all,

I wish I had better news to report (if you only knew how MUCH I wished that) but Cody is doing worse. He is now at the full therapeutic level for the steroids + the new drug (Depakote) and he's having even more seizures today than ever. So far we've counted 6 since midnight and they have progressed to involve both arms and both legs. We talk to the Dr. Monday to give a report - and if things continue this way - he'll probably take Cody off steroids and depakote and put him on a brand new anti-seizure drug.  Then we'll be sent home to do this all over again - pray the drug works while we deal with the side effects - and we'll watch, wait and see if the seizures will go away.

This nightmare just gets worse every day. He won't sleep. Yesterday he was up from 6am - 9pm with only 1 hour nap. He's up every 2-3 hours all night screaming for food. He gets delerious from sleep deprivation. He is constantly famished, irritable, has the worst case of thrush on the planet from the steroids, has a new tooth bursting through, and is bloated up like a puffer fish. I have to give him various doses of his meds 15 different times a day - most of which taste horrible. In short, he is miserable and so are we. Sorry to be so dismal...but that's the deal here at our house. Some good news is that his steroid injections don't even phase him anymore - he's so used to having the goop shot into his thigh muscle he barely flinches.

I am going to try to hire some help soon - as I cannot do this alone while Don's at work. It is a 2 person job taking care of this little one for the time being. Don and I are beside ourselves, as you can imagine. I wish I could conjure up something positive - but it feels pretty bleak. I ask you, once again, to petition the Lord for healing for our Cody. He seems to keep saying no...but I will not stop asking. I cannot bear to watch him suffer so.

With love and thanks,
Shawna

June 20

Hi gang - this is sent to just a few of you - a request for specific prayer reg. our Doctor. Cody is doing worse, as you know, on the steroids & depakote. Today the Dr. told us to begin taking him off steroids tomorrow (probably a week long process) - and we go in first thing in the a.m. for a new EEG. The Dr. is baffled at Cody's situation. His coordinator told me today that now he's not entirely convinced this is infantile spasms because Cody's just not responding to any of the standard treatments - in fact, he's gotten worse. He won't know much more till he looks at the EEG and meets with us Thursday.

This Dr. is awesome and is obviously considering the "needle in the haystack" rare syndromes that would mimic infantile spasms. Please pray that he finds the TRUTH about what's ailing Cody. I don't know what would be worse - to confirm the infantile spasm diagnoses - or to find some new, freaky disorder. With this progressing without abatement - it's a sign that if there is a different cause than i.s....it could easily be a brain malformation that would require surgery...or one that is irreparable. There's always the chance that whatever might be mimicing i.s. could be a better diagnosis (hard to get much worse!) -- and that's obviously what we're hoping for. The other 2 neurologists we've seen were adamant that it is i.s....so I'll be shocked if it isn't. The EEG will show a lot - and maybe point us in some new directions.

And if you get this before 10am - would you send a prayer up for Cody having this EEG (yet again). It is so hard on him. Thank you!!!

June 23

Hello everyone,

We had an EEG Tuesday - which was the best yet for ease and comfort for Cody. They swaddled him and he ate baby food for 40 minutes straight as they glued sensors and recorded his brain waves! He was much more calm this time around - which was an answer to prayer.

We waited on pins and needles for our Dr. appt. today to discuss the results and got some encouraging news. Whereas in the last month all 3 of Cody's prior EEG's showed constant, uninterrupted chaos in his brain ALL the time -- this one has absolutely normal brain waves when he wasn't seizuring! Obviously when he has a seizure (which he does about 6-12 time a day) it showed seizure spikes and chaos...but in between his brain was at total peace. This is brand new and such a welcome change. The bummer is that he is still seizing a bunch and we are now going to begin our 4th drug and the odds of controlling them get slimmer with each new drug. It will take 6 weeks (UGH) to wean him slowly off steroids so the side effects and low immunity will persist. The Dr. is happy to see some normalization -- but still extremely concerned about our inability to get his seizures under control. Because his waves have normalized in between seizures, the Dr. feels there is no damage being done currently - altho he will be at risk for developmental delay the longer the seizures go uncontrolled.

The other good news was that the Dr. says Cody is a complete anomaly. His seizures don't look anymore like classic infantile spasms...the classic hyppsarythmia waves on the EEG which is a telltale sign of i.s. is gone...and he's been developing like a champion during the last 4 weeks of seizures which is very uncommon for i.s. He's now trying to feed himself with a spoon, sitting up, etc. So the Dr. isn't completely sure that infantile spasms are what we're dealing with - altho this is something in that family of syndromes. So we will have an MRI to keep digging for what the cause is, possibly followed by a PET scan and a dreaded lumbar puncture. Dr. Roberts is just baffled and doesn't mind saying so. Which makes the course of treatment a bit of a mystery. He says Cody fits NO molds. Altho this is in the i.s. family - none of the other syndromes that would apply fit his symptoms so it's just a huge mystery. The Dr. wouldn't remove the 20% odds of normalcy because he feels anything in the i.s. family is still a pretty catastrophic diagnosis. So when I pressed him for how much the prognosis has changed, he said that he just doesn't know because he still doesn't really know what we're dealing with yet.

Could it be........that God is healing him and it's baffling the scientists? That it won't fit into a "mold" because science doesn't have a name for what God can do in a boy? This is my hope...that the reason it no longer looks like horrible infantile spasms is because it is leaving his little body. Please, Lord, let this be so.

So we're keeping him on depakote - and adding "zonegran" to try to attack the seizures from another angle. Cody had a real personality breakthru on father's day (I think it was his gift to Don) and suddenly he is a smile-meister again. He had disappeared almost completely in this puffy bloated body of his - never smiling or registering any emotion. Since father's day - he's been his normal goofy little self every day! Doing raspberries, laughing, reaching for us...it's a dream. I pray it continues. Don and I bawled when he began to smile again and just laid on the bed and played with him for hours doing everything we could think of to make him giggle.

We're dreading 6 more weeks on steroids - and the waiting for yet another 1-2 weeks for the new drug to take effect. Not to mention the horrible feeling of pumping all these meds into such a little body. It remains grueling - but I'm grateful for a slice of good news. Now it's all about keeping his brain normal and getting the seizures under control. Which are our 2 big prayer requests. The 3rd biggie is wisdom for the Dr. to find the needle in a haystack reason this is happening so we can treat him appropriately.

Other prayer requests: that during the next 6 weeks Cody won't get a cold or virus from his severely lowered immune system due to the steroids. That his blood pressure will stay in check. That he'll continue developing well. That he'll be able to sleep more. That he will make it thru being put under for the MRI with no problems. It's never a great thing to fully sedate a baby this young.

And of course - we hope for total healing. God has answered some prayers the way we'd hoped - I beg you to continue to lift up our child who is the light of our lives. We depend on you so much. Don and I are hanging in there -- but we are weary from worry and watching him have all these seizures every day.

"O praying soul, be still, be still,
He cannot break His promised Word;
Sink down into His blessed will,
And wait in patience on the Lord.

O waiting soul, be strong, be strong,
And though He tarry, trust and wait;
Doubt not, he will not wait too long,
Fear not, He will not come too late."

June 28

Hello all,

Nothing too new to report - but we got this photo back of Cody on steroids or "juice" as the athletes call it. It was just too cute not to pass on. As you can see, he is nigh on to a beach ball - but he's 25 pounds of pure puffy sweetness! He has "cushings syndrome" where the cheeks puff up due to the ACTH. He's still smiling sporadically altho he's had a rough last couple of days - has been up most of the night and has cried most of the day. If it were me, I'd be crying all day too! But as you can see in the photo - when he smiles - it's worth a day's wait!

His MRI is Thurs. at 1:30pm and we'd love prayer for a safe sedation - especially since his reflux makes things riskier when he's put under. Another big request is for the 6 hours prior to sedation when he can't EAT! He is famished 24/7 because of the steroids - so I can't imagine how he'll fair not being able to eat. I hope, by some miracle, he'll be able to sleep for a lot of that time but it's not likely since he very rarely naps at all these days.

He is still having clusters of seizures - so far 10 today where both his arms stiffen and fly up into the air repeatedly and his face goes into a trance and his hands quiver. It is heartbreaking still - we will never get used to it. Every night we lay hands on him and pray for the new day ahead thinking "maybe tomorrow will be the day things change."

Thanks again for joining us in prayer - we will keep you posted.

with love,
Don, Shawna and "Puff-baby"

June 30

Hello again,

The MRI set for tomorrow has been postponed till July 18th - they deemed Cody high risk for sedation because of his reflux so they have to wait for a certain anesthiaologist to work with him. So it'll be 2.5 more weeks to find out if there's anything wrong in that little brain of his.

Yesterday was a dream - he still had a lot of seizures but they were almost undetectable - barely a tremor - I only noticed them because I have become an expert. It truly seemed like he was on the cusp of getting rid of these beasts. I called the Dr. and raved - I couldn't wait to tell Don when he came home from work. Then late last night the seizures returned with a bigger vengeance than ever. During one typical 5-minute seizure...he has about 20 "spasms" one after another where his little arms stiffen and shoot into the air, his legs shake, his head jerks to the left. Today he had 9 of those 5-minute seizures so far. It was our worst day yet. I am so defeated - I was euphoric yesterday - it looked so promising.

Some good news - he will be weaned off the steroids in 2 weeks - the Dr. shortened that from the 6 weeks he had planned.

We are pumping up the dose of the newest drug, Zonegran -- so please pray that this will help - his little body is taking such a beating. We have blood draw tomorrow so I'd love prayer for that to go smoothly as the last time took 2 hours and a neonatal I.V. team who finally had to stick a needle in his scalp to get blood. The steroids constrict his veins so much that it's hard to get any blood out of them.

I'd also like personal prayer as I continue to try to navigate Dr. appts - pushing for things I think are necessary (like new drugs and quicker MRI's) - trying to get the Dr's to meet with us instead of saying "see you in 2 weeks...there's nothing more we can do." It is grueling to try to make sure we are doing everything we need to - and getting all the attention we need. Dr's are so busy and so apt to forget about you when you're not sitting in front of them. I want to be a good advocate for Cody and it is a full time job.

I'm sure you can tell I'm discouraged. This is absolutely unbearable. I know there's not much anyone can say to make it better -- just knowing you're out there helps. Please continue to pray for the seizures to stop.

With love and thanks,
Shawna